RDDSenedd 2013 rough

Ataxia South Wales chairman speaking at Rare Disease Day Parliamentary reception in the SENEDD, Cardiff Bay, Wales.

Transcription
Many Thanks You.....for this opportunity.

Ataxia- Whats that ?

'Ataxia' means ‘lack of order’. People with ataxia have problems with movement, balance, and speech.
Over 10,000 people in the UK have some form of ataxia.
Living with this Neurological and “Life-Limiting” condition is very frustrating to the patient, their families and carers.
There is currently no cure.
** This year`s Rare Disease Day Theme = Rare Disorders without Borders. **
I am Chairman of Ataxia South Wales (and trustee of AtaxiaUK) and also UK moderator of
Livingwithataxia.org which is part of Bens Friends Rare disease communities, giving Global support to patients of rarediseases.
I see a GENERAL Neurologist in a local hospital, but their knowledge of Ataxia is very limited (and I find myself telling them about it !)
I travel to Royal Hallamshire Hospital in Sheffield, to attend a specialist Ataxia clinic. This requires a 5 hour train journey.
Ataxia South Wales covers all the South and West Wales (a huge area).
To facilitate covering, such a large region, Ataxia South Wales has recently introduced a Support Group covering, Cardiff and the surrounding area, which already has over 20 members.
Plus Every year I attend the National Ataxia Foundation conference, in United States.

I have a raredisease and I am crossing borders !!

The word Research may conjure up an image that is very Medical or Laboratory “White Coats and test tubes” focused
That is not SO, it has a “practical side to it, as well
It is very likely that any Raredisease research opportunities, whether medical or practical, will go undetected by the patient of a Rare disease.
It has only been through my determination and by being involved in many related groups and organizations, that I have found any mention of research possibilities.

We need to Collaborate together, raising the Importance of research into Rare Diseases.
With RarediseaseUK`s report = Experiences of Rare Diseases ; Patients and Families in Wales
It shows that “we” are in this together regardless of Borders.

Ataxia, is NOT a Foreign Cab !!
Thank You